Global survey of stigma among physicians and patients with nonalcoholic fatty liver disease

Zobair M Younossi; Saleh A Alqahtani; Khalid Alswat; Yusuf Yilmaz; Caglayan Keklikkiran; Jesús Funuyet-Salas; Manuel Romero-Gómez; Jian-Gao Fan; Ming-Hua Zheng; Mohamed El-Kassas; Laurent Castera; Chun-Jen Liu; Vincent Wai-Sun Wong; Shira Zelber-Sagi; Alina M Allen; Brian Lam; Sombat Treeprasertsuk; Saeed Hameed; Hirokazu Takahashi; Takumi Kawaguchi; Jörn M Schattenberg; Ajay Duseja; Phil N Newsome; Sven Francque; C Wendy Spearman; Marlen I Castellanos Fernández; Patrizia Burra; Stuart K Roberts; Wah-Kheong Chan; Marco Arrese; Marcelo Silva; Mary Rinella; Ashwani K Singal; Stuart Gordon; Michael Fuchs; Naim Alkhouri; Kenneth Cusi; Rohit Loomba; Jane Ranagan; Wayne Eskridge; Achim Kautz; Janus P Ong; Marcelo Kugelmas; Yuichiro Eguchi; Moises Diago; Ming-Lung Yu; Lynn Gerber; Lisa Fornaresio; Fatema Nader; Linda Henry; Andrei Racila; Pegah Golabi; Maria Stepanova; Patrizia Carrieri; Jeffrey V Lazarus; Global NASH Council

doi:10.1016/j.jhep.2023.11.004

Global survey of stigma among physicians and patients with nonalcoholic fatty liver disease

J Hepatol. 2024 Mar;80(3):419-430. doi: 10.1016/j.jhep.2023.11.004. Epub 2023 Nov 18.

Authors

Zobair M Younossi¹, Saleh A Alqahtani², Khalid Alswat³, Yusuf Yilmaz⁴, Caglayan Keklikkiran⁴, Jesús Funuyet-Salas⁵, Manuel Romero-Gómez⁶, Jian-Gao Fan⁷, Ming-Hua Zheng⁸, Mohamed El-Kassas⁹, Laurent Castera¹⁰, Chun-Jen Liu¹¹, Vincent Wai-Sun Wong¹², Shira Zelber-Sagi¹³, Alina M Allen¹⁴, Brian Lam¹⁵, Sombat Treeprasertsuk¹⁶, Saeed Hameed¹⁷, Hirokazu Takahashi¹⁸, Takumi Kawaguchi¹⁹, Jörn M Schattenberg²⁰, Ajay Duseja²¹, Phil N Newsome²², Sven Francque²³, C Wendy Spearman²⁴, Marlen I Castellanos Fernández²⁵, Patrizia Burra²⁶, Stuart K Roberts²⁷, Wah-Kheong Chan²⁸, Marco Arrese²⁹, Marcelo Silva³⁰, Mary Rinella³¹, Ashwani K Singal³², Stuart Gordon³³, Michael Fuchs³⁴, Naim Alkhouri³⁵, Kenneth Cusi³⁶, Rohit Loomba³⁷, Jane Ranagan³⁸, Wayne Eskridge³⁹, Achim Kautz⁴⁰, Janus P Ong⁴¹, Marcelo Kugelmas⁴², Yuichiro Eguchi⁴³, Moises Diago⁴⁴, Ming-Lung Yu⁴⁵, Lynn Gerber¹⁵, Lisa Fornaresio⁴⁶, Fatema Nader⁴⁷, Linda Henry⁴⁸, Andrei Racila⁴⁹, Pegah Golabi⁵⁰, Maria Stepanova⁴⁸, Patrizia Carrieri⁵¹, Jeffrey V Lazarus⁵²; Global NASH Council

Affiliations

¹ Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Center for Liver Disease, Department of Medicine, Inova Fairfax Medical Campus, Falls Church, VA, USA; The Global NASH Council, Washington, DC, USA. Electronic address: zobair.younossi@cldq.org.
² The Global NASH Council, Washington, DC, USA; Division of Gastroenterology and Hepatology, Johns Hopkins University, Baltimore, MD, USA; Alfaisal University, King Faisal Specialist Hospital & Research Centre, Riyadh, Saudi Arabia.
³ The Global NASH Council, Washington, DC, USA; Liver Disease Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia.
⁴ The Global NASH Council, Washington, DC, USA; Department of Gastroenterology, School of Medicine, Recep Tayyip Erdoğan University, Rize, Turkey.
⁵ The Global NASH Council, Washington, DC, USA; Department of Personality, Assessment, and Psychological Treatment, Faculty of Psychology, University of Seville, Seville, Spain.
⁶ The Global NASH Council, Washington, DC, USA; UCM Digestive Diseases and ciberehd, Virgen del Rocío University Hospital; Instituto de Biomedicina de Sevilla (HUVR/CSIC/US), Department of Medicine, University of Seville, Seville, Spain.
⁷ The Global NASH Council, Washington, DC, USA; Department of Gastroenterology, Xinhua Hospital, Shanghai Jiaotong University School of Medicine, Shanghai, China.
⁸ The Global NASH Council, Washington, DC, USA; MAFLD Research Center, Department of Hepatology, the First Affiliated Hospital of Wenzhou Medical University, China.
⁹ The Global NASH Council, Washington, DC, USA; Infectious Diseases and Hepatology Department, Faculty of Medicine, Helwan University, Cairo, Egypt.
¹⁰ The Global NASH Council, Washington, DC, USA; Department of Hepatology, Beaujon Hospital; AP-HP, Université Paris Cité, Inserm UMR1149, Clichy, France.
¹¹ The Global NASH Council, Washington, DC, USA; Hepatitis Research Center, Department of Internal Medicine and Graduate Institute of Clinical Medicine, National Taiwan University College of Medicine and Hospital, Taipei, Taiwan.
¹² The Global NASH Council, Washington, DC, USA; Department of Medicine and Therapeutics, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China.
¹³ The Global NASH Council, Washington, DC, USA; School of Public Health, University of Haifa, Haifa, Israel.
¹⁴ The Global NASH Council, Washington, DC, USA; Department of Medicine, Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN, USA.
¹⁵ Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Center for Liver Disease, Department of Medicine, Inova Fairfax Medical Campus, Falls Church, VA, USA; The Global NASH Council, Washington, DC, USA.
¹⁶ The Global NASH Council, Washington, DC, USA; Division of Gastroenterology, Chulalongkorn University, Bangkok, Thailand.
¹⁷ The Global NASH Council, Washington, DC, USA; Department of Medicine, Clinical Trials Unit, Aga Khan University, Karachi, Pakistan.
¹⁸ The Global NASH Council, Washington, DC, USA; Liver Center, Saga University Hospital, Saga, Japan.
¹⁹ The Global NASH Council, Washington, DC, USA; Division of Gastroenterology, Department of Medicine, Kurume University School of Medicine, Kurume, Japan.
²⁰ The Global NASH Council, Washington, DC, USA; Metabolic Liver Research Program, Department of Medicine, University Medical Center Mainz, Mainz, Germany.
²¹ The Global NASH Council, Washington, DC, USA; Department of Hepatology, Post Graduate Institute of Medical Education and Research, Chandigarh, India.
²² The Global NASH Council, Washington, DC, USA; University of Birmingham, Birmingham, UK.
²³ The Global NASH Council, Washington, DC, USA; Department of Gastroenterology and Hepatology, Antwerp University Hospital; InflaMed Centre of Excellence, Translational Sciences in Inflammation and Immunology, Laboratory of Experimental Medicine and Paediatrics (LEMP), Faculty of Medicine and Health Sciences, University of Antwerp, Antwerp, Belgium.
²⁴ The Global NASH Council, Washington, DC, USA; Division of Hepatology, Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
²⁵ The Global NASH Council, Washington, DC, USA; Institute of Gastroenterology, University of Medical Sciences of Havana, Havana, Cuba.
²⁶ The Global NASH Council, Washington, DC, USA; Department of Gastroenterology, Universita Degli Studi Di Padova, Padova, Italy.
²⁷ The Global NASH Council, Washington, DC, USA; The Alfred, Melbourne, VIC, Australia.
²⁸ The Global NASH Council, Washington, DC, USA; University of Malaya Medical Centre, Kuala Lumpur, Malaysia.
²⁹ The Global NASH Council, Washington, DC, USA; Departamento de Gastroenterología, Facultad de Medicina, Pontificia Universidad Católica de Chile, Santiago, Chile.
³⁰ The Global NASH Council, Washington, DC, USA; Hepatology and Liver Transplant Unit, Austral University Hospital, Buenos Aires, Argentina.
³¹ The Global NASH Council, Washington, DC, USA; Pritzker School of Medicine, University of Chicago, Chicago, Illinois, USA.
³² The Global NASH Council, Washington, DC, USA; Division of Gastroenterology and Hepatology, University of Louisville School of Medicine; Trager Transplant Center and Jewish Hospital, Louisville, KY, USA.
³³ The Global NASH Council, Washington, DC, USA; William Beaumont Hospital, Royal Oak, MI, USA.
³⁴ The Global NASH Council, Washington, DC, USA; Central Virginia VA Health Care System (CVHCS); Virginia Commonwealth University (VCU), Richmond, VA, USA.
³⁵ The Global NASH Council, Washington, DC, USA; Arizona Liver Health, Phoenix, AZ, USA.
³⁶ The Global NASH Council, Washington, DC, USA; Division of Endocrinology, Diabetes and Metabolism, The University of Florida, Gainesville, FL, USA.
³⁷ The Global NASH Council, Washington, DC, USA; University of California, San Diego, San Diego, CA, USA.
³⁸ The Global NASH Council, Washington, DC, USA; Focus Medical Communications, East Hanover, NJ, USA.
³⁹ The Global NASH Council, Washington, DC, USA; Fatty Liver Foundation, Boise, ID, USA.
⁴⁰ The Global NASH Council, Washington, DC, USA; Kautz5 gUG, Köln, Germany.
⁴¹ The Global NASH Council, Washington, DC, USA; College of Medicine, University of the Philippines, Manila, Philippines.
⁴² The Global NASH Council, Washington, DC, USA; Department of Hepatology and Research, South Denver Gastroenterology, PC, Englewood, CO, USA.
⁴³ The Global NASH Council, Washington, DC, USA; Loco Medical General Institute; Saga University Faculty of Medicine, Saga, Japan.
⁴⁴ The Global NASH Council, Washington, DC, USA; Department of Medicine, University of Valencia; Hospital General Universitario Valencia, Valencia, Spain.
⁴⁵ The Global NASH Council, Washington, DC, USA; School of Medicine and Doctoral Program of Clinical and Experimental Medicine, College of Medicine and Center of Excellence for Metabolic Associated Fatty Liver Disease, National Sun Yat-Sen University; Hepatobiliary Division, Department of Internal Medicine, Kaohsiung Medical University Hospital, Kaohsiung, Taiwan.
⁴⁶ Division of Cardiac Surgery, School of Medicine, Johns Hopkins University, Baltimore, MD, USA.
⁴⁷ The Global NASH Council, Washington, DC, USA; Center for Outcomes Research in Liver Diseases, Washington, DC, USA.
⁴⁸ Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Center for Liver Disease, Department of Medicine, Inova Fairfax Medical Campus, Falls Church, VA, USA; The Global NASH Council, Washington, DC, USA; Center for Outcomes Research in Liver Diseases, Washington, DC, USA.
⁴⁹ Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Department of Hepatology, Post Graduate Institute of Medical Education and Research, Chandigarh, India; Center for Outcomes Research in Liver Diseases, Washington, DC, USA.
⁵⁰ Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Center for Liver Disease, Department of Medicine, Inova Fairfax Medical Campus, Falls Church, VA, USA; Center for Outcomes Research in Liver Diseases, Washington, DC, USA.
⁵¹ The Global NASH Council, Washington, DC, USA; Aix Marseille Univ, Inserm, IRD, Sesstim, Sciences Economiques & Sociales De La Santé Et Traitement De L'information Médicale, Marseille, France.
⁵² The Global NASH Council, Washington, DC, USA; Barcelona Institute for Global Health (ISGlobal), Hospital Clínic, University of Barcelona, Barcelona, Spain.

PMID: 37984709
DOI: 10.1016/j.jhep.2023.11.004

Abstract

Background & aims: Patients with fatty liver disease may experience stigma from the disease or comorbidities. In this cross-sectional study, we aimed to understand stigma among patients with nonalcoholic fatty liver disease (NAFLD)/nonalcoholic steatohepatitis (NASH) and healthcare providers.

Methods: Members of the Global NASH Council created two surveys about experiences/attitudes toward NAFLD and related diagnostic terms: a 68-item patient and a 41-item provider survey.

Results: Surveys were completed by 1,976 patients with NAFLD across 23 countries (51% Middle East/North Africa [MENA], 19% Europe, 17% USA, 8% Southeast Asia, 5% South Asia) and 825 healthcare providers (67% gastroenterologists/hepatologists) across 25 countries (39% MENA, 28% Southeast Asia, 22% USA, 6% South Asia, 3% Europe). Of all patients, 48% ever disclosed having NAFLD/NASH to family/friends; the most commonly used term was "fatty liver" (88% at least sometimes); "metabolic disease" or "MAFLD" were rarely used (never by >84%). Regarding various perceptions of diagnostic terms by patients, there were no substantial differences between "NAFLD", "fatty liver disease (FLD)", "NASH", or "MAFLD". The most popular response was being neither comfortable nor uncomfortable with either term (56%-71%), with slightly greater discomfort with "FLD" among the US and South Asian patients (47-52% uncomfortable). Although 26% of patients reported stigma related to overweight/obesity, only 8% reported a history of stigmatization or discrimination due to NAFLD. Among providers, 38% believed that the term "fatty" was stigmatizing, while 34% believed that "nonalcoholic" was stigmatizing, more commonly in MENA (43%); 42% providers (gastroenterologists/hepatologists 45% vs. 37% other specialties, p = 0.03) believed that the name change to metabolic dysfunction-associated steatotic liver disease (or MASLD) might reduce stigma. Regarding the new nomenclature, the percentage of providers reporting "steatotic liver disease" as stigmatizing was low (14%).

Conclusions: The perception of NAFLD stigma varies among patients, providers, geographic locations and sub-specialties.

Impact and implications: Over the past decades, efforts have been made to change the nomenclature of nonalcoholic fatty liver disease (NAFLD) to better align with its underlying pathogenetic pathways and remove any potential stigma associated with the name. Given the paucity of data related to stigma in NAFLD, we undertook this global comprehensive survey to assess stigma in NAFLD among patients and providers from around the world. We found there is a disconnect between physicians and patients related to stigma and related nomenclature. With this knowledge, educational programs can be developed to better target stigma in NAFLD among all stakeholders and to provide a better opportunity for the new nomenclature to address the issues of stigma.

Keywords: MASH; MASLD; SLD; communication; discrimination; fatty liver; metabolic; patient-reported outcomes.

MeSH terms

Comorbidity
Cross-Sectional Studies
Gastroenterologists*
Humans
Metabolic Diseases* / complications
Non-alcoholic Fatty Liver Disease* / complications
Obesity / metabolism